Celebrating Inchstones: Cade is 9!!

Thursday, February 11, 2010

Cade is 9!!

I can't believe our Cade is 9!!

I spent the day with him yesterday and I could really tell he was maturing and getting older. He was so polite and opened doors for me. He was patient while I took care of my errands before we got to his shopping! Of course, I've drilled the door thing into his head since we've had Asa and my hands are usually full!!

I remember when we had the ultrasound that showed he was a boy. Anna was heartbroken and it took a few days for her to really believe she was having a baby brother!

Cade was born at 37 weeks. I was worried the whole time I was pregnant with him. I'd read too many books by kid #2! In the labor room I was concerned he'd be small and need help. The midwife assured me he was Ok and likely 6-7lbs. A few hours later and we found out he was 9lbs. 4oz!!! Not too bad for a 37 weeker....if you still believe that!

He was always all boy! He loved trucks and balls and tools, even as a tiny thing!! He is stil all boy. He loves playing Nerf guns, baseball, exploring the woods, creating "hide outs" and riding his 4 wheeler.

He loved his Anna too! And she loved him, insisting that he move in her room with her at a young 18 months old!! Cade had just turned 2 when Gracie came along!! They have had a love-hate, but mostly love, relationship from the get go! Cade always let Gracie play right along with him and some of her tomboyness may be from her close relationship with him! They are so much alike that they clash.

Cade is pretty jealous of others with Asa. He wants to be the big brother so badly that he smothers Asa, not literally of course, but Asa is a kid who needs his space. Cade loves for Asa to come into his room to sit or play.

And what Asa lacks in eating, Cade makes up for but with sweets!! He has the biggest sweet tooth! He can smell sugar and chocolate from a mile away!

He is also the neat one around here! His room is spotless. Everything has a place and everything in its place! I wish I could be more like him!! I hope this is a habit he never loses!!!

Next year he will be double digits and that is so sad to me! Double digits is nearly a teen. And a teen is nearly high school. High school is right around the corner from college! Aaaack!

I have to go hug my sweet, I mean tough and rugged, birthday boy!!

2 comments:

Meghan Clement said...: Happy Birthday Cade!; February 12, 2010 at 2:30 PM
Debbie said...: Thanks for finding us!

Love your Blog Title...; February 12, 2010 at 7:42 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!